The cake-crusader tackles faith, pain, disability and life in general with honesty & cheeriness

Tag: Chronic pain

Do I want to take pain medications? The simple answer is no. Just like I don’t want to take any of the medications I am prescribed. But equally I know that those same drugs keep me functioning. That without them I would not be able to write this post, or stand, or walk the few […]

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Hi everyone, here I go with my latest attempt to kickstart my blog after some months of absence. Finally, finally, I feel ready to start writing regularl
y again. Hopefully, I’ll manage to post three times a week. For now, lets revisit the last few weeks in my world! In the past few weeks, I:

Have been concentrating on all the basics.

For me, this has meant more than just getting to the end of each day in one piece. Just getting from one hour to the next has often been a challenge, either because of a much disrupted sleep the previous night from insomnia, pain, (be it joint, stomach, or back) or due to my my highly functioning stoma, meaning I am up to empty it several times a night, despite using an appliance with one of the largest available.

If I settle down for a nap the following morning after a bad night, one hour, even two is never enough. And yet, keeping going is not an option either, as I am extra uncoordinated, clumsier, and even less able to think straight than usual. The problem is, after such a long nap, I have no inclination to write.
Additionally, i’ve had never-ending lists of admin, be it phone calls, emails to write, forms to fill… Unfortunately, these things have not been the only difficulties.

Have been confined to one room, for the most part.

After all that busyness, I am exhausted. This has been exacerbated, at least for the last six weeks, because of the unreliability of my electric wheelchair, meaning that even sitting still is hard work, as I need the support which I have from the pressure cushions on my chair, to enable me to sit up comfortably with less effort, less pain, improved balance and posture, and without putting undue stress on my back, which is already incredibly sore most days. Even when my wheelchair has been returned after being away for repair, I’ve been lucky to get the use of it for a full 24 hours without it stalling. As it is, it has stopped altogether, and is awaiting collection for the the fourth time in six weeks. How do I manage without such vital machinery? The truth is, I don’t! For the vast majority of this time, I’ve been confined to one room, usually my bedroom, as I have a profiling bed. This means I can press some buttons to adjust the mattress (in this case, a high-pressure one) to more effectively support my posture, and change my position when I am uncomfortable or in pain, without actually having to move my body. I am incredibly grateful to have access to such equipment, as without this I would be in constant unrelenting agony.

Fortunately for me, I have occasionally been able to leave the house in my (ill-fitting, too small and unsupportive) manual wheelchair if a carer, family member or friend has time to help me. This has mainly been for hospital appointments or the food shop. I’ve been unable to attend church in this time, as spending long periods of time in this manual wheelchair has done, and would do much more harm than good. While I am awaiting a permanent fix or replacement for my electric wheelchair, the confinement continues.

Have begun a tailor-made eating plan!

What am I doing with my time now I’m even more restricted than usual? In part, I’ve used the
time to plan food shopping, cooking and eating meticulously. In partnership with my dietician, I am eating much more lean protein to help fill me up without added bulk (or calories) in smaller, more regular meals and snacks. Due to my unique circumstances we’ve had to devise inventive ways of including all necessary vitamins and minerals in my diet, without me having to prepare, cook, eat and attempt to digest lots of fruit and vegetables, for me to struggle to absorb the nutrition anyway due to the shortness of the piece of gut I have left, and reduce the risk of blockages in the stoma, or over-filling of my ostomy bag. What a challenge! (Apologies if you were eating while reading this!) With help from care staff, also I’ve been using a reasonably comprehensive soluble vitamin and mineral tablet on a daily basis, to boost anything I am managing to absorb. As recently as the last few days, on advice from a GI consultant, I’ve recommenced a fluid restriction in combination with a litre of dioralyte daily (rehydration salts and electrolytes). All of this, though effortful is giving me more energy, helping me lose weight by reducing the temptation to snack or comfort eat, and generally feel better about myself. The results are also evident in regular blood tests. A long hard slog rather than a quick fix, but will all hopefully eventually be worth it.

4. The once gaping wound in my abdomen is no more!

Said wound has finally healed, though it needed loads of TLC and took an arduous five months to heal, some 3 months less than my fantastic surgical team expected. My surgeon himself, had some doubt that the wound would ever heal completely, but at a joint medical/surgical appointment last week, it was lovely to be able to tell in person that it had. The doctor said I made the surgeons day. I’ll bet they were glad to have good news for a change, especially given my prognosis and the miracle that I am here at all. As a Christian, I believe that ultimately God has orchestrated this healing, though other factors have undoubtedly helped including keeping the wound free other than the pre-existing infection on the outside of the wound, keeping it clean, and mostly dry, even while washing my hair, no mean feat in itself!

What else have I missed?

I have spent time doing the things I love again: cooking, baking, reading everything from ebooks on my kindle app on my smartphone, blog posts, news articles, catching up with friends family over occasional coffee or meals at home, or even more occasional meals or coffees out when accompanied. I’ve participated in church services online through skype and facebook, and even led my first one last Sunday. A separate blog post on that is to come. In the meantime, contact Dave Roberts to find out how to get involved in VOWchurch if you would live to, or even if you would just like to find out more.
Also on Facebook, I’ve joined a campaign called “Get Your Belly Out”, begun by four amazing yet ordinary girls seeking to raise awareness of Inflammatory Bowel Disease (IBD), raising money for a cure, and building up a loyal, friendly, support community in the process.

Lastly, I’ve participated in a webinar (a seminar on the web) or how to write memoir, tips and tricks to use, and what to avoid! This was organised by Writer’s Digest, and run by an agent in America on a weekday lunchtime, broadcast all around the world to aspiring writers in various time zones, 6 pm in the evening, in my case! I managed to stay awake (hurrah!) content rating for virtually the full 90 minute seminar, having learned lotads. I’m now working on the 1500 words to email to the agent, due in a mere 9 days (eeek). On that note, I must scarper!

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Tuesday’s daily prompt was one of the easiest I’ve ever answered. It was as follows:

Write a six-word story about what you think the future holds for you, and then expand on it in a post:

Only God knows what future holds

I find this an enormous comfort. I don’t have to strive anymore, because God’s got it sorted. I have no idea what the future holds, but He does… and he know’s what’s best.

That’s the simple truth. If I were to have a childlike faith, as I should, I should accept this and live by it without wavering. However, I am not as faithful to my father God as he is to me…! This is something I am learning over time, as I make mistakes, or try to have things my way. Were I completely disability and illness free, maybe I would have a husband and children of my own by now… or maybe not! Only God knows things like that, or whether I will ever be stable enough, and have enough support to have a job, and a career, or a husband! I am learning to develop a heart of gratitude for the many, many things I do have, from food, running water, flushing toilet and a roof over my head, a little money in the bank and money in my purse. This makes me in the richest percentage of people in the world. I think sometimes the disability lobby forget these things, though who knows what will continue to unfold with the welfare ‘reforms’. Things may well be completely different in a couple of years… or maybe not. I guess this is part of the reason it is important to trust God for the future. However, it is just as important to trust Him in the present, as I am to live for God now.

My life now also has consequences for the future; my eternal future. On Monday, I published a post about Invisible Illness Awareness week, and the scripture I quoted as helping me through the tough times is also relevant here:

Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. 4 And when Christ, who is your life, is revealed to the whole world, you will share in all his glory. (Col. 3: 1-4)

Scriptures like this help me keep going through the tough times. I have to admit, I am not superhuman, there are days I struggle so much with physical, emotional or spiritual pain. I am finding things tough at the moment but it helps to know that this isn’t the end though. What I do now will have a bearing on then. Just recently, the last 6 months or so at least, I didn’t see things as clearly as I do now. When things are bad I try to think of others more disabled than me or who have a particular need and pray for them, or to read a devotional by Joni Earekson Tada or a Psalm from my bible. It may be a song, or a prayer on Christian radio. It’s what Tanya Marlow called ‘the truth that comes in sideways’. (I highly recommend her post, which you can read here) I’m off to find some of that now to help me get back to sleep. I got a few hours rest before midnight but have been awake for at least 3 hours now!

p.s. I can’t remember where I read or heard this, but someone once said life is like a tapestry. We see only the picture on the front, but behind the scenes, at the back of the tapestry is the One who holds all the threads and can see the to bigger picture. One day, I will see the bigger picture too, but for now, I have to live in the present.

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Hi guys! The last time I posted was the 2nd of this month, and today is now the 9th. Put it like that, it doesn’t sound so much of a gap. However, before and after that post, I have been feeling unwell. It was an odd combination of stomach cramp, which I already take medicine for, and a bad cough that my GP gave me antibiotics for as a precaution, as the cough had lingered for weeks. Thankfully, the antibiotics have made a difference, and the stomach cramp has subsided. I am still very tired, and in a vicious cycle of lots of sleep to no sleep, (or very little) and then too much sleep again. I know from experience this will sort itself out to an extent, but I am usually shattered anyway. Much of what I go through, the carers see quite a bit of it, especially the main carer. My family knows a lot, but doesn’t generally see me day to day. Some close friends know a lot, others nothing.

The only One who knows everything, is of course, Almighty God. I was reminded of this very truth this week as I was reading Day Two of Stacy Williams 21 Days to Finding Purpose in Pain, which I won a copy of after explaining some of my experiences with chronic pain underneath a guest post on pain written by Stacy herself on my friend Wendy’s website, ilovedevotionals.com. One of the verses for that day was from Genesis 16:13:

“She gave this name to the Lord who spoke to her: ‘You are the God who sees me,’ for she said, ‘I have now seen the One who sees me.’” Genesis 16:13

I got such comfort from the thought that God sees me and knows absolutely everything I am going through. That same day I read a devotional from Joni Earekson Tada talking about how parts of the Bible, especially Leviticus concentrates on the details of how to honour God, live out their faith, and keep their homes, and food hygienic and safe as possible. All the littler things, and yet God was in it all, as he is in all the smaller details of my life too. He sees the pain; physical, emotional and spiritual. He sees the day to day struggles, and also the small triumphs. For all these things, I am extremely thankful.

It was thanks to reading ‘Chronic Rants’ post on Invisible Illness Week that I first knew about it. I read her excellent post on 30 things to know about her illness, and decided to answer them myself. Parts of my illness are physical obviously, such as Cerebral Palsy (CP) and I use an electric wheelchair to get around. If you would like to know more about CP, I wrote a post for America’s National CP Awareness Week earlier this year, which you can read here. So, Invisible Illness. Why do I feel so compelled to write about something so private? Well. if you don’t know, you can’t understand, and it makes it harder for you to be there for other who have hidden things wrong with their bodies too.

30 things about my invisible illness you may not know (to have a go, the link is here)

1. The illness I live with is: Chron’s Disease, bowel resection, and chronic nerve, muscle and joint pain from walking and being semi-active for years. Oh added to that, constant fatigue from medication, sleep problems and so on. I already had Cerebral Palsy, from birth.
2. I was diagnosed with it in the year: 2005, last major op was 2008, and pain has become chronic in the last few years, steadily increasing year on year
3. But I had symptoms since: 2002 (I was 19), though lived with first, most major bowel resection since I was a few months old.
4. The biggest adjustment I’ve had to make is: There are two actually; being a full time electric wheelchair user, and the consequences of that, and secondly having carers in my home two to three times a day to help me.
5. Most people assume: my Cerebral Palsy is my biggest problem.
6. The hardest part about mornings are: how long it can take to wake up. I feel so ill too, never feel rested, and often have a headache and am in pain, especially back pain.
7. My favorite medical TV show is: 24 hours in A and E.
8. A gadget I couldn’t live without is: not really a gadget, but couldn’t live without appliance on my stomach… and my wheelchair.
9. The hardest part about nights are: not sleeping, or waking up in the night in pain
10. Each day I take __ pills & vitamins. (No comments, please) about 10 morning, 4 or 5 both afternoon and teatime and about 8 at night, plus multi vitamin.

11. Regarding alternative treatments I: think sometimes they are useful. Massage can really help, as has acupuncture, though in the case of both treatments I need someone who knows what they are doing so as not to cos me further harm or pain.

12. If I had to choose between an invisible illness or visible I would choose: I already have both.
13. Regarding working and career: I desperately wish I had both. What career? My job is my health.
14. People would be surprised to know: I once crossed London on my own when I really, really wanted to visit a charity I care deeply about.
15. The hardest thing to accept about my new reality has been: how limited my life is.
16. Something I never thought I could do with my illness that I did was: see number 14.
17. The commercials about my illness: there are no commercials about them – but adverts for painkillers annoy me – if only it was that simple. I take at least 3 different pain killers and still live in chronic pain, constantly.
18. Something I really miss doing since I was diagnosed is: well, have always been ‘disabled’ but miss being able to walk around, however wonky that looked.
19. It was really hard to have to give up: walking
20. A new hobby I have taken up since my diagnosis is: card making, and baking.
21. If I could have one day of feeling normal again I would: Ooh, I’ve never had a ‘normal’ day. I would travel to see someone I still care deeply about.
22. My illness has taught me: to begin to learn how to ‘be still’.
23. Want to know a secret? One thing people say that gets under my skin is: “what do you do all day”.
24. But I love it when people: come sit with me
25. My favorite motto, scripture, quote that gets me through tough times is:

Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. 4 And when Christ, who is your life, is revealed to the whole world, you will share in all his glory. (Col. 3: 1-4)

26. When someone is diagnosed I’d like to tell them: Life doesn’t end, especially if you ‘only’ have a bag, you can life a normal life, As far as living with pain and fatigue goes, you can still have a life, it’s just a different kind of life.

27. Something that has surprised me about living with an illness is: how priceless ‘good’ care is.
28. The nicest thing someone did for me when I wasn’t feeling well was: brought me dinner, cooked it, AND washed up!!
29. I’m involved with Invisible Illness Week because: that’s just it, illnesses are invisible and people need to be made aware how life altering an invisible illness can be. A lot of what I suffer, I suffer in silence, alone.
30. The fact that you read this list makes me feel: that you care.

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Dear lovely followers, (should I have any left?!) If you’re reading this now, thanks for sticking with me! As you might have noticed, I haven’t been writing much over the last week or two. There is more than one reason for this, but I can only go into a couple of those here. You might remember reading about my little accident a couple of weeks ago now. I thought then I hadn’t done any lasting damage, not even to my knee, but unfortunately, I have. How long it may last, I don’t know, but the healing process may take a while. Though I live in England and have the backup from the NHS, I’ve been having to fork out (pay up!) for physiotherapy, originally for chronic pain in my back. So bad, that had I not gone private, I would have had to start being hoisted, say, from my chair to my bed, within a few months to a year, because of the severity of the pain and the level of restriction the pain caused. Fortunately, it is making a difference, but because this meant I was already regularly seeing a very good physiotherapist, I knew that if between the physio and I we could work out what the problem with my knee was, she would give me as good advice as she could. I was getting to the stage with my knee where the pain in my knee would cause my leg to collapse underneath me. An absolute nightmare for anyone with any mobility problems, never mind how someone who has mobility as poor mine is. I am still attempting to transfer front on, with the help of my zimmerframe, rather than side on with a banana board as the strength, co-ordination, and control in my arms is far from adequate for this. For those of you who know about chronic pain and/or life altering physical disability, I am sure ou can well imagine how difficult tranferring had become. Aditionally, my leg collapsing would cause my knee to spasm, which would greatly increase the pain, which would mean putting even less weight on my leg than I could all ready…!! This meant I was willing to let the physio do whatever it took to work out why I was in pain and how to help it get better. What she did have to do may well may you wince, as she had to ‘create the pain’, i.e. get me to take two or three steps so she could see it collapse, and once I was sat. prod my leg to fine out where the pain was. Yes, it was a painful as it sounds!! It turns out, I have damaged a major nerve at the back of my knee, which wraps round the side of my knee. The whole thing is badly inflamed. Apparently the nerve at the back of the knee splits into two, there is the siatic nerve, and the other one, which I cannot remember the name of! Once this was diagnosed, my lovely physio-terrorist (sorry, therapist) was able to give me advice. Advice so good, it has already helped improve my knee by decreasing the number of times it collapses, reducing the resulting spasm and increased pain. Anyone with chronic pain, or severe disability or both, will tell you things often go in a vicious cycle especially with spasms or pain. Breaking that cycle can be heinously difficult, but once you do, it can make an enormous difference. P.S. For anyone who would like to read more about the causes and effects of pain, see Health Activist, Mrs. Rants excellent blog. ————————————————————————————————————————–

I wrote the majority of the above last Wednesday, but had no time to publish the post. I am finishing this in the early hours of Monday morning, a day and a bit after early 30th birthday celebrations. My lovely friend who organised the bash asked my Dad to say a few words. I admit to having moist eyes! I may write another post explaining a little of what my Dad said that night, but he also referred to my blogging skills when listing some of the things I am now filling my life with. Apparently, I am a “Master Blogger”!! I am well and truly back. For your amusement, I have included a photograph of me at my party, which the lovely Bryony took of me.

I am wearing a black sash which says “Birthday Princess”, and I have a large pink badge pinned to my jacket which says “I’m thirty, pour me another”, with a picture of a wine or cocktail glass on it! I have a big smile on my face. I didn’t realise until I saw this photo that I am sat underneath one of the ceiling lights, so it looks like I have a halo above my head!!